Good evening. Thank you for the opportunity to testify before the Dyslexia Task Force this evening. I want to thank Commissioner Rosa, NYSED staff and the members of the Task Force for your work on this issue. I was proud to co-sponsor the legislation that established this task force and I eagerly look forward to the Task Force’s report and recommendations.

By way of background, as many of you know, I have been involved as a teacher, a higher education administrator, an attorney and a legislator with special education law, neuropsychology, disability civil rights laws and dyslexia for many years. My comments are informed by that experience.

I observed the September 23 remote hearing, and my testimony will address key themes raised by many of the comments and experiences relayed by parents and other individuals who gave testimony that evening.

1. School Boards’ misunderstanding of if not intentional noncompliance with state and federal laws.

   1. A number of parents testified to practices and omissions that are blatantly against the law and certainly inconsistent good educational practice. For example, a few people mentioned that schools are dropping reading goals from IEPs. There is no justification for doing this. I have been told by some that this is happening because children are not meeting their goals. That raises a serious issue, but not one that is constructively addressed by failing to have reading goals on the IEP of a child with learning disabilities who struggles to read. Similarly, many raised what appears to be a practice of developing an IEP without reference to or inclusion of the results of clinical assessments. The whole point of an IEP is to lay out a plan for the provision of special educational services based on assessment of the child’s needs and abilities. Whatever the rationale, these are not practices that can be allowed to continue in the state of New York.

   2. An unwillingness to accept results of outside evaluators or evaluations partially conducted through zoom (did we learn nothing from the pandemic?). Some testimonies indicated that school districts have told parents that (a) they cannot use data that wasn’t provided through the school’s assessment. Not only is this not true, but it is particularly problematic when the school’s assessment didn’t even evaluate the areas key to the presence of dyslexia (e.g., oral reading, reading fluency, phonological processing, rapid naming); (b) because a diagnosis included some computer-based measures, the data was not accepted. This makes no sense as increasingly technology is used in test development and administration. Moreover, because many assessments performed by schools are insufficiently granular, and only skim the surface, they may indicate the child is reading poorly, yet not shed any light on why or whether a disability may be present. Again, this is the point of the school’s doing an assessment in the first place. Failing to assess key factors just leaves dyslexic children out in the cold and may well violate the law; (c) denial of disability rights laws and/or special education protections because the child is “too smart to have a reading disability,” “they’re not the worst reader in the class,” or “they’ll grow out of it.” This reflects nothing so much as an utter lack of understanding of what dyslexia is and it must change. Thirty years ago, I filed a case against the NY bar examiners where it asserted the same argument denying my client accommodations on the exam. After many years of litigation, including a trip to the Supreme Court, my client won consistently and handily. When the ADA was amended in 2008, Congress endorsed the 1998 Second Circuit reasoning in Bartlett v. NYS Bd of Law Examiners as that which Congress had originally intended and was amending the law to codify. See, 2 Cong. Rec. H 8286, 8291 (Sept. 17, 2008). I would be happy to share the underlying decision(s) with the Task Force and the Department if you like.

2. Parents’ misunderstanding of pertinent laws and their rights. This is to be expected when they are too often given specious rationales for a school’s not providing services which themselves reflect a lack of understanding. One myth that was raised is that economically disadvantaged children are not able to be diagnosed as having a learning disability or Attention Deficit Hyperactivity Disorder. This is untrue. I believe these misunderstandings flow from the IDEA’s definition of learning disability:

   Specific learning disability means a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in the imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations, including conditions such as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. Specific learning disability does not include learning problems that are primarily the result of visual, hearing, or motor disabilities, of intellectual disability, of emotional disturbance, or of environmental, cultural, or economic disadvantage. 34 CFR Section 300.8 (c)(10) (emphasis added)

   Nothing in the above suggests that a child may not be diagnosed or served as a child with a learning disability if they have a co-morbid disorder of low vision, or hearing loss, or economic disadvantage, for example. Schools often misinterpret this and NYSED can and should disabuse them of this notion.

3. Confusion between IDEA classification and a diagnosis. Several people testified along the lines that “dyslexia” needs to be a separate category in the DSM5, because schools are not willing to use that terminology otherwise. First, the New York law I passed in 2017 required that the terms dyslexia, dysgraphia and dyscalculia be permitted on IEP and related eligibility documents. After convening a broad stakeholder group, NYSED published the required guidance in August 2018 to assist schools in following this law.^[1] NYSED should now act to make sure that school districts understand what the law is and that the ensure the schools within their jurisdictions follow the law. Moreover, such an interpretation was never endorsed in federal law or regulation, as confirmed in a “Dear Colleague” letter issued by U.S. Education Department in October 2015. Second, published in 2013 with a Text Revision in 2022, the DSM5 diagnostic criteria for Specific Learning Disorder, requires a clinician to further characterize the diagnosis as an SLD in reading, mathematics and/or written expression. While it has been criticized ^[2] for flaws in the development of the DSM5, it does identify dyslexia. According to the American Psychiatric Association’s website, “An estimated 5 to 15% of school-age children struggle with a learning disability. An estimated 80% of those with learning disorders have an impairment in reading in particular (commonly referred to as dyslexia) (emphasis added). Dyslexia is common, affecting 20% of the population.”^[3]

4. Schools’ refusals to conduct evaluations or accept the results of independent evaluations. Several parents testified to such denials, even in cases where the parent is a professional in a related service field, and even after typical warning signs have been brought to the district’s attention as early as kindergarten or first grade. Parents too often find that their children are not evaluated for many years. Clearly for each year of delay the child becomes further educationally and emotionally disadvantaged. The hearing was replete with evidence that schools don’t seem to recognize the red flags for the presence of an SLD, and even after an evaluation is done refuse to accept the results for arguably specious reasons. Nevertheless, testimony also demonstrated that with the right kind of help, such students can make enormous progress and become successful students.

5. The psychosocial impacts of failing to identify and treat a child’s learning disorder When children have trouble reading, they feel stupid. They are anything but. They know they are not reading like their peers. We do a grave disservice to them by ignoring the warning signs and dismissing the struggle as one they will outgrow. They don’t. When provided appropriate treatment (direct instruction using evidence-based reading approaches), they learn to read, but have already suffered the consequences of what in most cases is benign neglect. Our teachers need to know what they are looking at and be free to make a referral for further assessment without intimidation. Our teacher preparation programs are not equipping our future educators to succeed in the classroom regarding evidence-based methods aligned with how the brain processes written language. I introduced legislation, A8924, that would audit literacy instruction in higher education’s teacher preparation programs. It’s clear our colleges have not been training our future educators on how to teach literacy to children. Instead, they have been teaching long-debunked methods that are failing our teachers and students.

6. Need for screening. Some testified in support of universal screening. While there is no perfect screening tool, they exist and can work together to identify a child who is at risk for dyslexia. Contrary to a few professors’ concerns that there might be false positives, the point of screening is to identify those whose difficulties with reading need further study – not to make a decision on diagnosis or classification on screening results alone. A clinical evaluation will account for the type 1 error (false positives) as well as type 2 error (false negatives). That this was put forth as a reason not to conduct screening to identify children who may be at risk for dyslexia indicates a lack of understanding of the proper and limited role of screening. The point is to identify early the children who may need special educational services to get a jump on their educational development and avoid their having to fail before getting services. That’s why I introduced bill A4198, which would require school districts to conduct mandatory early screening for dyslexia for all children in pre-kindergarten or kindergarten and continue to test on a regular basis until each child successfully completes second grade. Far too often, dyslexia goes undetected because teachers and parents do not recognize the early signs of dyslexia at the precise time when early interventions can be the most productive. By requiring mandatory early screening, we can reverse the cycle, saving children from future failure and its psychosocial impacts.

7. Parents’ experiences and educators’ beliefs in the efficacy of their approaches are vastly divergent. If nothing else, the hearing served to confirm that we have much work to be done and that the current situation is unsustainable.

_________________________________________________________________________
[1] https://www.nysed.gov/special-education/students-disabilities-resulting-dyslexia-dysgraphia-and-dyscalculia

[2] Many believed the process by which the DSM5 was drafted to have been politicized and departed too much from psychiatric practice and evidence.Books criticizing the DSM5 were published almost simultaneously with the final version. Comments on the draft DSM5 were also critical. See for example, Comments on Proposed DSM-5 Criteria for Specific Learning Disorder from a Legal and Medical/Scientific Perspective by Ruth Colker, JD, Bennett Shaywitz, MD, Sally Shaywitz, MD, and Jo Anne Simon, JD., which took issue with a number of things in the original draft, including an effort to have the DSM5 neurodevelopmental disorders pattern itself after a too narrow interpretation of IDEA 2004, an education law that was at the time due for reauthorization. https://dyslexia.yale.edu/advocacy/national-advocacy/response-to-dsm-5-criteria/ Dr. Sally Shaywitz and Dr. Bennett Shaywitz are members of this Task Force. Most clinicians today are using the ICD-10 instead.

[3] The APA website also specifically includes “A note on terminology: Specific learning disorder is a medical term used for a clinical diagnosis. It is often referred to as “learning disorder.” “Learning disability” is a term used by both the educational and legal systems. Though learning disability is not exactly synonymous with specific learning disorder, someone with a diagnosis of specific learning disorder can expect to meet criteria for a learning disability and have the legal status of a federally recognized disability to qualify for accommodations and services in school. (emphasis added) The term “learning difference” is a term that has gained popularity, especially when speaking with children about their difficulties, as it does not label them as “disordered." Id.